Sunday, July 24, 2011

Gagging and Princesses

During Mikan's last ENT visit, we didn't learn anything new. She wanted him to try a higher dose of Zyrtec and then a nasal steroid to see if the drainage and subsequent gagging would cease. So far we have only increased the Zyrtec and nothing has changed. He still gags frequently (during meals and between) and refuses all solids. The ENT said if the nasal inhaler doesn't work, then she would refer him to an allergist. In the meantime, we are also looking into feeding clinics in central and southern Indiana. On a positive note, she said that because his sleep study was normal, he could finally get rid of the biox! That red probe has been attached to his poor fingers, hands, and toes for more than three years. When it finally leaves our house (as the last of several monitors), it will mark the end of an era of machinery.

This weekend we celebrated the adoption of my new sister, Sophia. My parents have acted as her foster parents from birth (three years ago), and now it is finally official. Although she's always been accepted as one of the family, it is exciting that we know she is here with us to stay. We are pleased my parents have unquestioningly cared for her when she needed it most and that she'll never have to worry about a stable home life in the future. So, Mikan is four months older than one of his aunts. I'm sure odder situations exist. Her adoption party included a Disney Princess moonwalk. Sophia liked that there were pictures of princesses, Mikan liked that it was a castle, and John liked that there was a basketball hoop inside.

Sophia and Mikan

Tuesday, July 19, 2011

Happy Birthday to Mom

Last week's storm blew down a walnut tree in our neighbor's yard, which fell on our massive sycamore. Both caused damage to our wood shed and fence. John spent the past week cleaning up our backyard. Most disappointing is the fact that our now damaged sycamore will have to be removed. All of its gigantic limbs are now hanging over our house. It has nothing to balance on the opposite side. It's HUGE. Removal is not an easy task. We are still waiting for quotes from several tree removal companies. Our insurance company will pay for the damage done to our house if it falls during the next storm, but they won't pay to get rid of it ahead of time.

Mikan's gagging fits and refusal to eat anything except Pediasure continue. We see an ENT this week for help.

Yesterday during therapy, Mikan's PT said she didn't think Mikan had any overwhelming muscle or tone abnormalities. The quality of his walking is poor, but she thinks he has the ability to do it. He will walk short distances for us, but nothing substantial. He is still very unstable and prefers to hold one of our hands. We know it will be a slow process though. We return to Indy for an eval in early August, and we have our first Shriner's appointment in Chicago soon too.

Mikan's favorite game right now is pushing Anica down when she sits up. It's almost like a compulsion. If she's sitting up, he MUST go push her down and laugh. I told him he'd better be careful because she'll be strong enough to scoot around soon, and if she is anything like her mommy, then she isn't going to just sit there and take it from him. He really does love playing with her though. They will just stare at each other and giggle, then roll around on the ground and hug.

It's my birthday today. All I want from my kids is a tolerable dinner out that doesn't draw too much attention from strangers.

Mikan and Anica in her baby bathtub.

Thursday, July 14, 2011

Swallow Study Results

Last week John won two tickets to see Josh Groban in Indy from a radio show. He gave them to me as an early birthday gift since seeing a Josh Groban concert was on my bucket list. I took a friend Tuesday night, and we had a blast. I left Mikan with John, and my brother Zach who lives in Indy watched Anica during the concert. But my Mikan responsibilities returned early the next morning, and I made the three-hour trek back home with Anica at 5am to drive Mikan to his horseback riding lesson and swallow study.

Although initially hysterical at the sight of all the machinery, Mikan relaxed enough to drink Pediasure, a little water, and one Cheerio during the study. The results showed that Mikan drank his Pediasure and ate the Cheerio fine with no signs of aspiration. However, when he drank a large gulp of water, the water penetrated his vocal chords. He didn't aspirate, but it proved we still need to be cautious. The therapist reccommended we encourage him to only drink small amounts of water at a time. She also noticed that he tucks his chin when he drinks water. This is a strategy she teaches adults who have difficulty drinking since tucking the chin closes off the vocal chords and helps prevent aspiration. She thinks Mikan has learned to accommodate on his own. Since Mikan hasn't had a history of illness related to aspiration, we are hoping it won't cause him too much trouble, and he will outgrow it soon. She agreed that we should talk to his doctor about an allergy med since his drainage may be causing gagging and feeding delays.

We also think Mikan may be brewing a sinus infection. This would be his third infection this summer. We hope that once his seasonal allergies are managed this will go away.

This morning Mikan helped feed Anica her oatmeal. He didn't seem interested at all in trying it himself. In fact, after each bite he kept saying, "Anica's all done!" because he wanted her to play in a blanket tent with him. The speech therapist who read his swallow study repeated the mantra we've heard his whole life. "He just needs more time. Just keep the eating experience positive and don't push him. He'll get there." She didn't seem to think his six-month stagnation was a huge cause for concern. She said it was pretty normal. I think she meant normal for the abnormal. Right?

Sunday, July 10, 2011

Mikan playing at a park in Ft. Wayne that was designed for handicapped children.

We enjoyed the past week visiting with our families. We appreciated everyone housing the four of us and our endless stream of bags. Mikan spent a lot of time at the zoo, parks, and splash pads of Ft. Wayne.

Mikan picked one blueberry off of a bush yesterday and decided he'd had enough. I guess John will have to do most of the picking without the kids this year.

We received scheduling confirmation from Shriner's Hospital in Chicago. Mikan will be evaluated in early August.

This past week Mikan's eating has been terrible, and he has had several gagging fits. He will cough up clear mucus at times. My hunch is that this is related to an allergy problem, but I can't be sure. This gagging is assaulting his already meager eating skills, so we'd like to get it under control.

Last week John played a radio game and won 2 Josh Groban concert tickets.
So, since
a)Josh Groban is my favorite singer,
b)John makes fun of Josh Groban any time he hears him on the radio, and
c)my birthday is next week,
I'm using the tickets and taking one of my friends to the concert in Indy. Thanks John!

Friday, July 1, 2011

A Quick Update

The kids are doing well and enjoying the summer. Mikan loves going to the beach and has finally gotten used to playing in the sand.

The Medical Front:

Mikan appears to suffer from seasonal allergies like myself. We are both a little uncomfortable lately, but he doesn't complain nearly as much as I do.

Mikan has a swallow study in a few weeks to check for thin liquid aspiration and any mechanical problems with his solid eating.

He has an ENT follow-up at the end of the month and a possible ear tube placement with another bronchoscopy in August.